Community News & Updates

By Cristina Stanger, Self-Advocacy Liaison WRFN

*This article was originally published in the Family Pulse Newsletter February 2020*

When meeting with clients in my role as Self-Advocacy Liaison, I generally disclose my own diagnoses of exceptionality within the first 15 minutes of an appointment.

With that in mind, it may surprise you to know that I am fairly guarded in sharing my diagnoses in my day-to-day life. With time and practise, I’ve developed a strategy to side-step full disclosure of a formal, medical diagnosis. Instead I describe what accommodations I require, or what exceptionalities I have in a practical sense, without getting too technical. I’ve heard this described as ‘partial disclosure’ by another self-advocate, but I find that term confusing; I prefer to think of my approach as “explaining what I need” on an as-needed basis.
 
Let me draw a parallel to personal finances. Generally speaking, one does not openly share personal financial information with people outside of one’s inner circle of support (those who do are usually committing a social blunder). Just as I don’t volunteer my personal financial details unless absolutely necessary, I also don’t volunteer my personal medical details any more than necessary either. I consider a diagnostic term to be almost like medical currancy - very valuable and very personal. And in my experience, using a diagnostic term isn’t necessary or helpful in many situations.
 
The reasons why I think very carefully about full disclosure:

• I would be sharing very important information about myself, and that action cannot be undone.
• I can request accommodations without disclosure of a formal medical diagnosis, based on my understanding of the Accessibility for Ontarians with Disabilities Act.
• I have no way of knowing how this information will be received; Do they have a preconceived notion about my condition? Were they prepared to receive such important and delicate information?
• I do not know for certain what will be done with my medical information (even if I have expectations about what should be done from a confidentiality standpoint).
• It allows space for someone to question my diagnosis based on their own understanding (or lack thereof) of a diagnostic term. As a result, I may not get the support I need if they make their own assumptions.
• Full disclosure makes me more vulnerable to discrimination. While this may seem pessimistic, I think it is a realistic consideration.

The reasons why I find explaining what I need to be more effective:

• It doesn’t expect too much of the person receiving the information. It took me years to understand my own diagnoses, including the medical terminology, so how can I expect someone else to do this quickly and accurately?
• It gives concrete information for others to work with. Most people want to be helpful - so explaining what I need allows them to help me more effectively and to remove the guesswork . Eg. “Sometimes I get overwhelmed in crowds, is there a quiet space I can use to unwind if I need it?”
• This approach subtly acknowledges that I do have some form of difference or exceptionality, so it doesn’t leave people wondering why I might be doing things a little differently from the status quo.
• By explaining what I need to be successful, it shows that I am trying to work and contribute at my highest level of capability. It demonstrates a level of personal awareness and understanding, which is seen as a positive attribute by others.
• Explaining a need or difference without a diagnostic term makes me less vulnerable to misconceptions or misinformation. And, for some reason, it seems harder for others to question a subjective explanation of need versus an objectively stated medical label.
• It allows for relationship building to work toward a full disclosure down the road, if I deem it appropriate to do so. Eg. “Remember how I need a decluttered workspace, and I don’t have a lot of stamina for highly social events? That’s actually because I have xyz. I wanted you to know this because abc.”

With this approach, I only tell others what they need to know, when they need to know it. I don’t have personal experience disclosing on behalf of a child, but I still believe explaining how best to support your child will get you farther on a practical level than focusing on diagnostic terms.
 
There are times when full disclosure may be appropriate, but even then, it can still be paired with an explanation of need to be most effective. In the case of a medical practitioner, I will disclose my diagnosis and then follow it up with relevant information. For example, at a physiotherapy appointment I might say, “I have xyz, which means I have a high pain tolerance and I have difficulty localizing pain. So I may have trouble answering some of your questions.” I try not to assume a medical professional will be adequately or accurately informed about my particular conditions; it is not humanly possible for them to be up to date on everything. Taking the initiative to explain the relevance of my medical diagnosis within a certain context becomes a form of self-advocacy.
 
As always, this is my personal philosophy. Every person and situation is different, and as such, may require a different approach to disclosure. Whatever you choose to do when it comes to disclosure of exceptionality, whether for yourself or a family member, please use your best judgement and make that choice thoughtfully.

If you or your family members would like to discuss this, or any other topic, please reach out to Cristina through the Ask A Self-Advocate program (AASA). As with all WRFN programming, the AASA program is provided at no charge.